SSI and Medicaid: Moving to a Place Based on Healthcare

“What do you mean I’m not eligible for Medicare?” I groan into the phone. “I’m on Social Security, aren’t I?”

Years of work weren't enough to qualify for Medicare

At this point the Social Security agent kindly explained to me that I had not worked enough years before becoming disabled with type 1 narcolepsy to qualify for Medicare.

Medicare is federal health insurance for people determined disabled by the government. My years of work in school did not count as professional working experience, either. Had they, I would have qualified many times over.

Despite holding various part-time jobs during college, sometimes multiple at a time, it still wasn’t enough to qualify me for Medicare! My severe narcolepsy with cataplexy onset when I was 20 years old. It is frustrating to know that if it had onset just a few years later, I would likely be eligible for Medicare.

I decided to move for better Medicaid coverage

As a Social Security recipient due to my permanent narcolepsy disability, I am eligible for Medicaid in most states. Unfortunately, while my state’s Medicaid is considered middle-tier compared to others, it does not provide basic dental services or eye check-ups.

After researching a plethora of Medicaid programs, and weighing the pros and cons of each, I decided to move to a new state in order to get improved coverage. I don’t want to lose my teeth!

The fear of not getting my medications refilled

As a person with narcolepsy, I am reliant upon daily medication to allow me to partially function as a human being. Without medication, my sleep attacks are constant and uncontrollable. My nightmares are indelible. I feel like a shell of a person – unable to sleep, unable to wake, stuck in a torturous land between both.

One of the complications of moving (and in my case, having to change insurance while doing so) is the possibility of not being able to refill medication prescriptions in time. This is one fear that has kept me from moving so many times before.

As I prepare to cross 2 states to my new life, I tremble in fear at the thought of being without Wakix or my mental health medications for any period of time. It really is terrifying and soul-wrenching to be untreated for narcolepsy – and dangerous to be untreated for my mental health.

Moving to a new state and new insurance with narcolepsy

I spent today calling various agencies and pharmacies, helping them coordinate my insurance coverage ending. Unfortunately, Arizona Medicaid does not offer a grace period of coverage when moving out of state, so my coverage will be terminated the day that I move into my new place.

Thankfully, Wakix offers a program for patients that allows them to continue their medication even if they are unable to get their insurance to cover (or fully cover) it. However, I have to wait to apply for this program until after my Medicaid insurance is no longer covering me.

Getting basic needs met should not be so stressful

It is ridiculous the amount of stress and red tape involved in coordinating medical care in America. It is especially scary for people with disabilities, who rely on medical care to be able to function in any form. I hope we can progress as a society to the point where people can pursue better lives and new experiences without the visceral fear that comes from not having their basic needs met.